beckyg Posted November 24, 2003 Share Posted November 24, 2003 My rash has been spreading the last few weeks--now it is all over my legs and chest; for three months I just had it on my face. The rash on my face hasn't hurt anything but my vanity, and my vanity mostly disappeared long ago. But the rash on my legs is TENDER. There are no open sores--just little red bumps. When I wash them, no matter the soap, it feels like there are needles in my washcloth. Pulling my pants up over my thighs is a delicate procedure. I haven't talked to the oncologist about this--I have an appointment next week. I just wondered if anyone had suggestions. Becky Quote Link to comment Share on other sites More sharing options...
Fay A. Posted November 24, 2003 Share Posted November 24, 2003 Sometimes we end up with an infection on a cellular level. What you've described is how I started out. Ended up with cellulitis in all the hair follicles. Call the doc and let him deal with it. Bactroban worked best for me, but now I'm using erythromysin cream. Hope it heals quickly. Fay A. Quote Link to comment Share on other sites More sharing options...
beckyg Posted November 24, 2003 Author Share Posted November 24, 2003 I called the oncologist this morning and the nurse told me that the manufacturer of Iressa now recommends that Iressa users use a lotion called Udderly Smooth on the rash. She told me to pick some up and try it for a few days--if things don't improve, I should call them back. It is just a very thick cream with Vitamins A, D, and E, Aloe Vera and Lanolin. I'll let you all know if it helps. Becky Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted November 24, 2003 Share Posted November 24, 2003 Becky, I have used Udderly Smooth for several months, especially after radiation and I loved it! I hope it works for your rash. One other thing rule out is shingles. I developed them on my esophogus after radiation and it took quite awhile to clear it up. Prayers and best wishes! MO Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted November 24, 2003 Share Posted November 24, 2003 Hey Becky, Don’t know that I can help much but was just reading a very interesting presentation at Medscape.com on rash associated with EGFR inhibitors. I won't go into detail but it's a good news - bad news story. Bad news - We don't know a good way to treat the rash. Antibiotics may help. Topical steroids may help. Retinoids may help. None of them is great. Good news - The rash correlates well with tumor response. The worse the rash, the better the tumor response and the longer the survival. Non-responders never have a rash, good responders always do. Sam Quote Link to comment Share on other sites More sharing options...
Ry Posted November 25, 2003 Share Posted November 25, 2003 You know the thing about the Iressa rash is it's not really a rash. Usually when you think of rash you think of red spots on the skin. This is like lizard skin. This stuff is terrible. John has sores that come and go on his scalp and it is on his face and down his neck. It is flaky and red and it can get real tender in areas. He uses a topical ointment that the onc. ordered, it helps but doesn't get rid of it. I think I'll have him try the cream you're talking about and see if it helps. Good luck Becky. Let me know if it works. Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted November 25, 2003 Share Posted November 25, 2003 Becky, Sam's post was truely encouraging, huh? Sorry about the rash, but it sounds like the Iressa is really working for you! Cheryl Quote Link to comment Share on other sites More sharing options...
Snowflake Posted November 25, 2003 Share Posted November 25, 2003 Becky, I was taken off Iressa due to side effects that worsened every check up. When the rash first appeared, the oncologist put me on an antibiotic. It seemed to help, but as soon as the ten days were up, the rash was back and worse than ever. My primary care doctor gave me a liquid to put on my scalp (it was HORRIBLE there) and it HELPED some, but just took off the "edge" of the nerves... When the rash worsened to more red than white ANYWHERE on my body, my hair started to fall out, too. I've been off Iressa since July and although there are no new "spots" that are oozing, the redness on my face is still Rudolph-red. I used an aloe cream that was suggested by my radiologist and Eucerin that was suggested by my pharmacist...nothing really seemed to work for longer than five minutes.... (The above suggested cream was not something that anyone mentioned to me, I'm not discounting it, didn't try it.) The relief I did find when the ITCHING was driving me nuts was to lock myself in the bathroom and fill the tub with warm water and soothing sea salt (and then ME)....sometimes the relief from the bath lasted long enough to fall asleep - in time to be awakened by a "potty call" two hours later. It's some pretty potent stuff, that's for sure! I hope you find something that works for you, I think itching is one of the WORST feelings and can quite quickly drive ME up a wall.... It's hard to be uncomfortable in your own skin... It may come down to dancing nekid in the moonlight with the faeries and wood nymphs.... Good luck in th search! Becky Quote Link to comment Share on other sites More sharing options...
beckyg Posted November 25, 2003 Author Share Posted November 25, 2003 Becky, I am not having anywhere near the trouble with the rash that you described. My face is red and blotchy, but it doesn't hurt--I have just been washing and moisturizing it normally throughout. The rash on my legs doesn't itch or ooze. It just looks like I have ingrown hairs all over my legs--little red bumps. They only really bother me when I am doing crazy things like washing them or pulling clothes over them. Occasionally my scalp gets a little tender, but a few days of baby shampoo has taken care of that so far. It has affected my body hair--some falling out, some growing in different than it use to be (kinky curly hair on my arms, for example), but the hair on my head is very thick these days. I tried the new lotion last night and this morning and there is no miraculous change, though it is nice lotion. I hadn't noticed that my skin was particularly dry until it soaked up the lotion and looked noticeably different. So I don't know whether it will help the skin sensitivity, but it at least is helping the dryness. As a side note, we had our first hard freeze of the season this moring--I had forgotten how hard it is to breathe cold air. (I know, I am wimp about cold, but 28 degrees is really cold to me!) Happy Thanksgiving, everyone! Quote Link to comment Share on other sites More sharing options...
beckyg Posted December 2, 2003 Author Share Posted December 2, 2003 Well, I have been using the Udderly Smooth for about a week now. No miraculous clearing up of the rash--I still have red bumps all over my legs, but they are MUCH less sensitive. I wouldn't want to scrub them or anything, but washing and drying my legs is no longer painful, and I have stopped dreading pulling up my jeans. The upshot is that I do recommend the lotion for everyone taking Iressa--it might even be that if I had started using it early on, the rash would never have gotten to the uncomfortable point it got for me. Becky Quote Link to comment Share on other sites More sharing options...
Ry Posted December 2, 2003 Share Posted December 2, 2003 Thanks for letting us know. I was about to PM you to ask how it was working out. I have not found a place to purchase this yet, still looking for it. Quote Link to comment Share on other sites More sharing options...
beckyg Posted December 2, 2003 Author Share Posted December 2, 2003 Ry, Here they sell it at Wal-Mart. I also found it at Eckerd's--they didn't have the Udderly Smooth, but they had the same thing packaged as "Udder Balm". The Udderly Smooth comes in a white bottle with black spots--I guess to look like a cow. Becky Quote Link to comment Share on other sites More sharing options...
Ry Posted December 2, 2003 Share Posted December 2, 2003 Well we have a Wal-Mart, hadn't thought to look there. I'll check for it, thanks Becky. Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted December 2, 2003 Share Posted December 2, 2003 Ry, If you can't find it let me know and I would be happy to send you some. God Bless, MO Quote Link to comment Share on other sites More sharing options...
Guest Piermarie Posted December 3, 2003 Share Posted December 3, 2003 I just saw Udderly Smooth at Trader Joe's market near where I live, it is a whole foods/organic supermarket.....not sure if that helps or not.... Pier Quote Link to comment Share on other sites More sharing options...
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